tv Charlie Rose Bloomberg November 5, 2015 7:00pm-8:01pm EST
>> from our studios in new york, this is "charlie rose." charlie: dr. francis collins is the director of the national institutes of health. he has been described as the man who holds the most powerful job in american science. president obama tasked him with two projects, the precision medicine initiative and the brain initiative. the precision medicine initiative provides new approaches to disease treatment and prevention. it accounts for genetics, environment, and lifestyle to determine diagnosis. it aims to enroll one million volunteers. the brain initiative looks to increase understanding of the brain and their logical diseases.
i am pleased to have dr. collins back at the table. welcome. dr. collins: great to be back. charlie: we have talked about many things here. tell me about these new things. i'm constantly curious about where the new is. what is precision medicine? dr. collins: it is the contrast to one sized fits all. we have been trying to make medicine precise over time with variable success but still it is the case when you go to the doctor and need intervention about your health care, you will get a generic recommendation based on evidence built on a generic person. you are not generic, nobody is. the idea precision medicine is to combine what we are learning with dizzying technologies about
individual differences. , yourna, your genome lifestyle, your exercise pattern. in one placet data on a large cohort of americans and could find out what works for the individual that would be a good thing. that is one of the goals. charlie: what works for an individual. dr. collins: if you were a healthy as most try to be, what should we be doing to maintain that? pretty much now everyone is told to do the same thing. charlie: exercise and diet. dr. collins: and don't smoke. those are good things. not behings will perhaps the best fit for every person. some people it would be more important to pay attention to diet than to exercise, and others for whom smoking is high
risk. there is this thing called the genome. we all are born with a deck of cards. it is up to us how we play the cards but it influences a lot of what happens to us in the course of our lifetime. if we get sick we want to know how best to manage that illness. a lot of it is one-size-fits-all. you would not go to the shoe store and pick any shoe off the rack without noticing the size but when you go to the doctor you are getting that kind of issue. diabetes, what kind of diabetes do you have? tied to disease probably isn't one disease. it is for different interventions that would make a good outcome happened. precision medicine is trying to for that apart right now cancer, which is something we can talk about. that is where we are furthest
along. charlie: someone said to me in your profession in the next 5-10 years we will have significant cures to cancer. josh: i totally -- dr. collins: i totally agree with that. significant curious, i'm not going to say every can race of cancer -- every case of cancer will be cured. we will have cured some that we can't cure now. charlie: how many can we cure now? dr. collins: we do really well with childhood leukemia, high chickens disease. we curate almost all the time. we do well with a melanoma even after it has spread. the death rate from cancer has dropped by 1%. we are across the board saving more lives from cancer. .hey are hard-won battles to see that drop even further is going to take all the
technologies we are talking about and bring them to bear on this with energy and determination. charlie: what do you do at the institutes of health? dr. collins: we are the largest supporter of biomedical research in the world. it has a budget of $30 billion a year. it goes to all of the finest institutions, medical centers, small businesses in the country doing this research. when you read about a breakthrough in cancer -- it is because of nih. torlie: they decide how further research. dr. collins: not all by myself. charlie: but the buck stops with you. dr. collins: people send us their best ideas and we don't we put that through the peer-reviewed process, the toughest in the world.
here's look at the proposal to see if it is going to work or not then they assign it a priority score. if it is in a good range they go to it. let's see what you can do in 4-5 years. that is the best system. right now it is a system under stress. the chance that the grant that is going to be funded is down to 1-6. you see six good projects and you choose one. throwing away because we are not funding it things that could save lives. dr. collins: i am afraid i am saying that. they have lost 25% of its purchasing power for research. . it was complicated by the sequester which took away a billion dollars we have not recovered. our difficulty dealing with our
fiscal situation has had a major consequence and slowed us down from things that we could have been doing. we would be further along than we are now had it not been for this difficult period. there are lots of foundations that are invested in this. let's be clear, we are in an ecosystem with the private sector and they spend twice as much as nih does getting those great ideas out the door. we need them and they need us but they are not actually in a position to ramp up funding either. charlie: tell me about the brain initiative. dr. collins: i would love to. the brain. pounds between our ears made up of 86 billion neurons, each of which which has a thousand connections to other neuron's.
86 trillion connections. the most complicated structure in the known universe and we are audacious enough to say it is time to figure out how what works. but how doneral idea these circuits do what they do? how is it i am looking at you and i know you are charlie? how is it you are listening to my words and hopefully they are making sense? how are you retrieving memories? we don't know how that works. to know if we are going to get to the bottom of autism or alzheimer's or epilepsy. all these incredibly important frustrating neurological conditions. our problem is we are making progress but not at the level we could if we understood the basic foundations of how the brain works. we can do things pretty well
when you look at the whole brain. andave these amazing scans we can look at individual neurons and say what is the cell going to do if i do this with this transmitter but there is this space in between the cell and the brain that we don't have information about. to goain initiative aims after that and figure out the kinds of technologies that need to be invented to measure tens of millions of nuance at once acting under some interesting stimulus to see what they are doing, learn the language of how the brain accomplishes these things. probably the most audacious program they can imagine. our brains are complicated to understand. we are not smart enough to understand our braids. -- brains. you are funded for how many years? dr. collins: everything is
funded for one year because the congress has to decide what are they going to do the year after. the plan for this, a bold plan put together by visionary , lays out a plan to 2025. we are now into that starting the third year. much of that is building technologies and then it moves into applications and to understanding disease. >> when you look at some of the more remarkable things like gene editing, what is happening there? dr. collins: this is a great story. it comes out of the most obscure area of basic science you can imagine. it is sort of interesting with basic science. bacteria have their own way of fighting viruses.
basically the bacteria have figured out how to damage the viral dna by editing it. when you learn that system and see how elegant it is you can out of the bacterial system and put it anywhere else you want to. if you are a researcher and you want to make a mouth that has a mutation, that used to take years. it was fraught with errors. now it is a week or two. charlie: what is it? dr. collins: basically a molecular surgery that because of the ability of these bacteria are best bacterial enzymes to hone in on a genome and find the one that you told it to look at, it goes and finds it and then it sniffs it. that gene out or it can even replace that letter.
cure sicklewant to cell anemia, something i hope we get to. maybe we can do it. charlie: to cure sickle cell anemia. dr. collins: yeah. take someone with sickle cell disease and take this stem cell approach where you can take a skin biopsy, grow a few cells, convince them to go back and time and make any cell you can want them to. they grow forever. you take that mutation and you fix it. it is still in the person cells. you change the one letter. you grow them into blood forming cells, give it back to the person. it is their cells. charlie: and they are cured of the sickle cell. is it possible now? possible now.t is
it is being actively pursued. it works pretty well and animals. charlie: think of what you can do. dr. collins: we are actually seeing people getting concerned minute, are there concerns about not using this. about howve a meeting to worry about using this if it got into the germ line. if you change the human genome in a way that was passed to the next generation, if you modify an embryo. that is a bad idea and we ought not to go there. charlie: give me the worst story. dr. collins: we think we are so smart we understand how to mod a high human biology and make it better. something evolution has been working on. in the next two months we think we are going to make it faster. some person somewhere decides i'm going to take a human embryo mess around and
try to make that person stronger , reduce their chances of getting all sign mers by manipulating genes. we don't know what we are doing. the law of unintended consequences applies to the genome. it is a complicated system. you don't know what the consequences are. you have created a human being, who may reproduce. have turned a child into a commodity. charlie: can you do this with worms? dr. collins: you can. it works really well. charlie: rats? dr. collins: and mice. it works well. charlie: why won't it work with humans? dr. collins: i think we are special. you're working in a laboratory. charlie: rats who have had this done do they go crazy?
to collins: it is too early know. we have only been doing this a short time. i thought you could make it faster. , theythey didn't act on are very different. even when we find cures and rats it doesn't transmit to humans. dr. collins: that is often the case. we have cured cancer so many it is an everyday event. most have not transmitted. ansuppose you were having inherited disease. to anyone number of them. and you had the capacity to go embryo knowing that what we know now, we can go in and change whatever it is. breast cancer. an inherited disease.
and change it. is that ok? dr. collins: you don't know what other things you may be affecting. in that scenario you can do that now without having to use gene editing. embryosasically create in in vitro, do a biopsy and decide which ones they want to implant. charlie: chronic fatigue. did you write something? -- iollins: i have done have been puzzled about how little we understand about this condition. here is a scene we have been talking about. chronic fatigue syndrome, it is a heterogeneous collection of individuals. the institute of medicine has defined what we should limit it to. people who are profoundly affected by fatigue coming on
after -- you can't get out of bed. if you are disabled, you are unable to carry out daily activities. you have other things which make you worse instead of better. you have sleep disorders. sleep is not as refreshing as it should be. your blood pressure drops and you pass out. it is serious stuff. it is particularly frustrating to see cases, hundreds of thousands of them of people who were healthy who have a flulike illness but they go to bed and then they cannot get out for months. we are going to make a big push to get the answer here. andg these new technologies figure out what is going on in this condition. wewe understood that maybe would know what fatigue of other sorts is about. why do people on chemotherapy get fatigued? we don't really know.
there are so many things you can ask about what the technology in front of us. >> it is possible in the next few decades, and aids free generation. dr. collins: absolutely. we already have made substantial strides in that direction. work has shown that if you find is hiv-infected at the earliest possible moment and treat them they cease to be infectious. you can cut back the transmission. we are making significant progress in terms of understanding how to have those at highest risk take chronic medication like you would for other diseases. people at high risk, why wait until they are infected area do this as a preventive strategy. where the real excitement is is the vaccine. it has been 30 years we have been trying to make it back in
and it has been frustrating. your body and mind does not seem to know how to make the anti-bodies. charlie: what does it do? dr. collins: it has to cause them to make a broadly neutralizing anti-body that will take any aids virus and say no you don't. our natural immunity is not so good at that. they look at the superficial layer of the aids virus and make an anti-body against that. that very so dramatically that it is not protective. there are a few people who make these anti-bodies we can see what the pathway needs to be to get there. your immune system is not wired to deal with eggs but we could aach it the lessons may take couple of trips. the first vaccine gets you situation.that
i am confident we are on the path to a successful hiv vaccine 5-10men -- within the next years. we will need to take care of people who are infected and even there we will figure out how to cure them. -- hat is the cry and -- charlie: what is an idea that excites even though you do not know the potential? >> i am excited about this future image. this is just an idea that might have enormous potential but no one knows exactly how. dr. collins: it is the empowered individuals. we had our complete genome
sequence available to us who have all manner of monitors to see how our health is going. and sensors telling us what is around us might be bad for us. and all kinds of ways to find out early on if something is going wrong with you. a blood test that tells you years before pancreatic cancer shows up that it is starting. that is not entirely science fiction anymore. it may be the early warning sign that we are starting to discover. if you take that. it is a big part of genomics. wearable sensor part is everything you could think of. you get everybody in the nation and the world access. sick carerm our system into a health care system. i would loved idea
to see come true. i'm doing everything i can to get there. charlie: and i will help you, i will. bill gates has convinced me, he has given and devoted so many billions of dollars to making a dent. he would be the first to tell you if you are going to scale it it has to come from governments. you have talked about it, a $30 billion budget. dr. collins: yes. he is right. he is one of our most valuable partners. more than half of the money that goes into global health research and the world. the gates foundation and an 80 h, where are the dollars going to support research, half of the total dollars in the world going to those organizations. charlie: over half.
dr. collins: some people will on why are they spending global health? diseases don't they attention to country boundaries. we have a responsibility for those who are less fortunate and have less resources to reach out. countryod for our to be seen not just as the soldier of the world but the doctor too. charlie: and we need to have the right political leadership. dr. collins: indeed. charlie: francis collins. back in a moment. stay with us. ♪
charlie: jay fishman has been chairman and ceo of travelers for more than a decade. he has built the company to one of the largest providers of capital insurance in the united states. earlier he was diagnosed with als, known as lou gehrig's disease. on december 1 he will step down as ceo and remain at travelers as executive chairman. dr. jeffrey rothstein is director of the brain institute and the robert packer's institute for als research. he is also an executive director of answer als. the largest coordinated initiative to end als in the history of the disease. i am pleased to have them both at the table. welcome. >> thank you. nice to be here.
charlie: what did you know about als? jay: not very much. i knew lou gehrig. hawkingare of stephen and that was about it. it just isn't something that presents itself on a daily basis to people. charlie: how old when they said to you you had als? jay: i am 8-12 months post diagnosis. i was late 61 when i was diagnosed. , theoctors will tell you disease isn't the easiest thing to diagnose. symptoms often tell you whether you have the disease are not. how do you present complicated issues. after how much diagnosis? jay: a lot of tests, a lot of of tests.ns, a years
i went to lots of different doctors. one after another. finally someone said it is time to see a neurologist. i had not been. there was no one who caught in the early stages. charlie: how do you explain that? dr. rothstein: it's pretty common. it takes a year from the first symptoms to get final diagnosis by a specialist. early in the disease the manifestations are so protean and common. hand weakness. there are a lot of reasons why we have hand weakness. keys,e with zippers are or maybe her foot is weak. for a man they made trip on a golf course. after that they save my leg is not right. and they blame it on the fall.
.hey will go to the internist the internist will work you up if it isck injury or hand, carpal tunnel. a few months go by, maybe they get surgery. it is common to have carpal tunnel or back surgery. that will fail. patient comes back to the surgeon and says what did you do, i'm not getting better. there is something wrong. that percolates the time where they are referred to a neurologist. charlie: what amazes me about that is jay would have access to the best doctors in new york by definition. the best doctors did not have any sense that may be we should see a new rolla just? dr. rothstein: i can't speak for jay.
all i can tell you is my experience. it is common. they are such mild things. alsurologist doesn't see that commonly. they are going to go after what is common. it is only after they don't get better. that repeatsk and itself. dr. collins: in my case i have the -- it is in the core. my weakness was in my core muscles. toability to stand erect, cough, clear my chest, they were deteriorating. they are like in the other muscle. it becomes more challenging to
breathe and cough. people who are not trained in it are looking for limb weakness. i didn't present any. i tilted to the right and having trouble breathing. it wasn't picked up. one of the things we are working hard on, it shouldn't be this -- here theeone common markers. these are the 15 things. muscle twitching. if they are twitching it doesn't mean you have it but that is a symptom you want to read flag. they should bring someone to the doctor and say something is not right here. charlie: what does it mean if there is early diagnosis? dr. collins: for some early great becaused be
we have therapies. -- dr. rothstein: especially cancer, of course. we hope it will lead to better therapies. our problem is the other end of that. patientagnoses, to a going for a year or more without knowledge of what is going on, from doctor to doctor, it puts you in the stage to say now i know what is wrong with me and i can go to people who can help me . while we look for drugs that are things we can do for patients to make their lives more enjoyable and give them hope. >> it is so important. not all patients are the same. i approach this, some the best advice i got was to lean into the disease. the progress is inevitable. but the needsvary i'm going to have our clear and
in front of me. anticipate,t i can getting a wheelchair fitted when you can no longer stand is next to impossible compared to trying to do it when you can move to chair and share. silly things like that but being able to lean into the disease is important. i embrace the purpose of it. my mortality, it comes on you instantly. it is one of my going to do with the time i have left? that was the quickest thing that happened to me. with what discussion do i want to do with the time i have left and how do i want to use it? if i had not known that you don't have the opportunity to plan. it has made a difference. charlie: you knew you had been testing for it. you got confirmation. by then you knew everything there was to know about als i
assume. /i have -- jay: i have learned more. i knew of its path. it is fatal. increasing paralysis and ultimately if you are lucky complete paralysis, you survive long enough to reach that stage. what ultimately kills you is breathing. you simply can't breathe. so the ability to lean into that , the technology has changed enormously. remarkable people doing great work in that. charlie: did you go through an emotional -- so much. i can't tell you why not. a year before i was diagnosed if you had asked me tell me about your life i would have said remarkably blessed. i could have told you in hundred reasons why. a terrific family, working with
terrific people, good stuff. i said i wasn't going to let the end of my life changed the definition or my perspective on how i looked at the rest of it. we are all going to face this. maybe not this disease but no one gets out alive. we are all going to face it. i pitched up my tent and said how my going to use the time i have left. charlie: and your family went through this with you? jay: yeah. , they have been terrific. one is a doctor. my wife, it is a struggle for her. it shows from time to time. i don't have to anticipate the hereafter. she does. charlie: when you are gone. jay: and being a young widow.
no one anticipates being that way. she has to deal with that. i don't have that burden. they have been great. more supportive than anybody deserves. charlie: do you have hope? jay: not for myself. medical hope. i have no illusions anything going on today will cure me. charlie: no cure around the corner. dr. rothstein: there is no cure around the corner. jay: i want to leave a legacy. i've asked myself, so i am not deeply religious but spiritual. past thend once i get science of it, random choice, stuff happens, i convinced myself i'm being punished for a past life or alternatively i was
given this to help do something about it. charlie: let's accept the letter. jay: that is what i have done. i'm engage with my time, resources, moving the needle so that once i am gone, people will say the years he had he used thoughtfully and productively. it happens every day. it is tough to get out of bed. not for the faint of heart but once you are there you have a mission. charlie: and the mission is? jay: i'm trying to identify projects. that is how i came to know jeff. projects that i thought had promise. i bumped into jeff. that is one of the things about this disease. there is no organized place to go. they will say here of the 10 things worth getting involved in.
but jeff is carrying a mission to begin an individualized treatment, examination of als. we went to his lab. that motoneurons could be yours. so now we can begin to test things against you. not just the whole population but against you. that gets into the notion of what is you. testing --, jane am genome testing. what was so compelling was the basic science. let's stop trying to find a drug and throw it at it. let's understand the disease and have better luck at treating it. what is the specifics you have, how do we treat it? it was so motivating.
charlie: they raise a lot money with the bucket challenge. dr. rothstein: they raise a lot of money. charlie: we don't know if it is going to als or not. jay: what was disappointing, that was one of the greatest grassroots efforts i've ever seen. it came from the people and it caught on. lots of money raised. my initial objection was there was no accounting. no one said thank you for engaging. this is how much we have raised. there were rumors and stories about how much had come in but there was no accounting for it. i thought that was a lost opportunity.
the way it came up from people entitled to a response, and accounting. with anally came out piece a couple of months ago on how much was raised by them. you might have sent your contribution to the nda. i might have sent mine to als connecticut. forward with an amount. over $100 million raise. and here is what we have done. you can look at that and everyone have their view on if it was thoughtfully invested or not. i think it -- i think it could be different. charlie: suppose you had an unlimited budget. how much velocity with that ad? dr. rothstein: that's a valid question. i'm not entirely sure i could tell you a true answer. what jay has initiated would not be possible.
it is well beyond what other groups would pay. it would require the ability to bring multiple people together and the business mandate. this plan is running off the world j is used to. milestone driven projects. they are getting kicked out and bring someone else in. this is a need to get information fast. point, ahat daughter-in-law was diagnosed when she was 41 years old. lee has committed and pledged what i would characterize as an indoor miss amount of money to medical research and really engaged. yes taken basic business principles, responsibility, benchmarks, and the best scientists in the world and put
real money behind it. if we were sitting here he would say we are not missing dollars, we are missing ideas. come forward and we will collaborate. it is a makes of both. there are resources there which need people thinking outside of the box. what i found compelling about style,is collaborative thinking outside the box. that is what compelled me. charlie: is it likely we will find a pathway to als that will be similar to parkinson's? dr. rothstein: yes. i said that too fast. there is no question research makes a difference. a new gene was discovered four years ago and it has changed als as a field. dementia.and that gene defect accounts for
half of people who have the inherited form, a large chunk. there he unexpectedly even if you have no family history there is a likelihood you will carry this gene defect. it is a common mutation. it is not just an als. dementia and huntington's. it has moved so fast and quickly because of philanthropy. government moves slow. i love having government money but the newest discoveries which only came out in this area a year ago teaches these could be targets for other diseases. that is important. we have hope for that. charlie: this voice banking. how does that work? >> my son forward to me an
article from the boston globe. john costello is a communications specialist, who when you still have your voice, you get a microphone and record phrases, the 1.0 version of this is mp3 phrases. good morning how are you. , yousing an eye tracker can trigger those phrases. instead of a voice coming out as darth vader it comes out as you. that is the early stages it. of it.e it is moving to where you can begin to bank words. the technology is good enough to link words together. charlie: you are a guy who grew up in the bronx. didn't come from a rich family. what did you want to do? demean thet mean to
printing press. my father paid the rent and educated his kids by renting a printing -- by running a printing press. the growing up much.ence to aspire to my world was narrow. i wanted to get out of college and get a job paying put food on the table. thefascinating thing is connections of my life and how things changed how i began to perceive the opportunities i were out there and what i could do to access them. a paycheck andng put food on the table to i can really do something. charlie: i can be competitive. jay: that was a big deal. before --lot of years
and one of the benefits of having this disease is i have nothing to hide. it is all out there. i went through a long time as a kid from the bronx. myself working for jamie dimon and bob live and i am succeeding. -- andgrown up thinking i find myself in this crowd. the role changed so much for me. charlie: fascinating. you realized -- i belong here. i have shown i can do the same kinds of things these mentors can do. jay: and it took looking up with the right people at the right time. i've had good jobs before and have been successful. it was of a different nature. when i came to look for that
group i learned what it was to work where it felt good. all the work i had done before that were adversarial places. personally competitive. what cindy and bob created wasn't that way at all. dynamic of miimon good enough, smart enough? you can imagine how many times. that is the process of growing up and maturing, seeing the world around you. i came to the conclusion i am smart enough. smart enough to work in that environment and succeed. achievement and excellence is not just a product of iq. jay: perfect. has i thought
stunning eq. sandy can be demanding. she could yell -- he could yell at you. in the big picture he made you feel good working for him. there was a warmth, almost a family since to add. it didn't mean it was demanding but he made you feel good. you wanted to climb a mountain for that guy. charts,th an iq off the what can you learn? he rolls up his sleeves and he is in it. you want to learn working for jamie, you are going to get into it. you will learn how to make people feel good. they do better when they see you. you come by all of these things. when you told sandy you were not going to be what he
might have wanted you to be, what did he say? .ay: he was upset with me he was very upset and -- charlie: you were his kind of guy. he had trained you. jay: all true. , i knew ire with you could not be an effective ceo at citigroup. it was for lack of experience. that place was so big and broad and challenging. i knew i didn't have the background to do it effectively. i aspire to run my own place. i wanted to lead. sandy, it down with said look, you wear the number two guy at american express and that was not good enough for you when you decided you needed to leave. you have to understand my reasoning here. he said absolutely not.
the conversation. in me atsappointed that moment. i gave them everything i had for the 12 years i was there. i wasn't the right leader there and i knew it. you didn't convince him. jay: i loved working with him. what he didn't understand, it was hard to leave. you work somewhere and you build what we built, the stock was $20. when i left it was $600. we had success. that was amazing. i loved working for him. it was hard to leave. she couldn't understand that i wanted to do more with my
potential than just be there. we have since made up. that is what you do. we are terrific. charlie: same with jamie? jay: we were always on the same headlines. i felt badly for him when he went through his own issues. he has come through it well. , thelessings of my life people i have worked with and how they made me feel, the opportunity they gave me, how can you not love them? charlie: where are you now? for thestein: well, first time i'm ok. it is clunky. i use a wheelchair when i need to. i can't walk long distances. it is what it is. five years left and
loving every minute of it. my life has been with a purpose and mission. i was never going to be someone who would retire and go play golf. , even if i had my health. i was going to be engaged. now i am engaged in this mission and get to meet different kinds of people. these are people with deep commitments. charlie: people who work on things that are bigger than them. jay: you bet. i tell them all the time, being the patient is an easy. being the doctor is an easy either. , ithave to deliver the news is difficult news. so have to do it in a way the patient does it leave devastated. the human aspects of delivering this diagnosis to people and how
to help them through it, you have what time you have left. i admire their engagement. it is a tough field. charlie: is there a part of you that says somehow, somewhere maybe something will happen. jay: no. not for me. it is ok. lee.w you know jimmy his 62 years old, gets on a treadmill and goes down that day. face are in. toe chosen for the moment see it as an opportunity. that is how i wake up every day. am i going to call. legacy, all i have left.
>> i am john heilemann. mark: i am mark halperin. with all due respect to the biblical slaves of egypt, you didn't build that. ♪ mark: on the show tonight, jeb on the family and ben carson's fresh beat. but first, the doctor is in the hot seat. thatost of this week, hotseat has been occupied by marco rubio. now, two stories in the last 24 hours have put ben carson in the proverbial barrel. the first is from cnn, looking into his claims ofav